Every 10 years, the HHS leverages scientific insights and lessons learned from the past decade, along with knowledge of new and emerging issues, data, trends and innovations to set the nation’s health priorities. In 2007 and 2008, the Healthy People 2020 framework was established, consisting of the vision, mission and overarching goals. In 2009, specific objectives and strategies to achieve them were developed. This month, the HHS is requesting public comments on the draft set of proposed objectives for Healthy People 2020. You are invited to comment on the proposed objectives and topic areas and suggest additional objectives and/or topic areas that you feel are missing.

There are 38 topic areas available for review. Some of the areas that garnered our attention included:

• Cancer: new or modified objectives include (1) an increase in the proportion of cancer survivors who report physical health-related quality of life similar to the general population, (2) an increase in the proportion of men who have discussed with their healthcare provider whether or not to have a prostate-specific antigen (PSA) test to screen for prostate cancer, and (3) an increase in the proportion of women aged 40 years and older who have received a breast cancer screening based on the most recent guidelines.

• Heart Disease and Stroke: new or modified objectives include (1) an increase in the proportion of adults aged 20 years and older who are aware of and respond to early warning symptoms and signs of a heart attack or stroke, (2) a reduction in the proportion of persons in the population with hypertension, and (3) a reduction in the a reduction of the incidence rates for heart disease and stroke.

• Genomics: new objectives are (1) to increase the proportion of persons with newly diagnosed colorectal cancer who receive genetic testing to identify Lynch syndrome (or familial colorectal cancer syndromes) and (2) to increase the proportion of women with a family history of breast and/or ovarian cancer who receive genetic counseling.

  I’m surprised that there are only two objectives for genomics! In ten years, genetic testing should be a first stage clinical assessment tool to diagnose disease and inform clinical decision making.

• Health Communication and IT: new or modified objectives include (1) an improvement in the health literacy of the population, (2) an increase in the proportion of quality, health-related Web sites, (3) an increase in the proportion of persons who use electronic medical records, and (4) an increase the proportion of providers who use health information technology to improve individual and population health.

Your input can make a difference — participation will shape Healthy People 2020, providing a framework to address risk factors and determinants of health and the diseases and conditions that affect our communities.

Comments may be submitted in writing either via the public comment website at http://www.healthypeople.gov/hp2020 or by emailing HP2020@hhs.gov. Comments will be accepted through December 31, 2009.

Healthy People

Healthy People has set and monitored national health objectives since 1979 to meet a broad range of health needs, encourage collaborations across sectors, guide individuals toward making informed health decisions, and measure the impact of prevention activity. The Healthy People process aims to be inclusive and its strength is directly tied to collaboration. Since its inception, Healthy People has become a broad-based, public engagement initiative with thousands of citizens helping to shape it at every step along the way.

For more information and to stay updated:

Subscribe to the Healthy People listserv for the latest information on Healthy People 2020 and to receive e-mail notices of related news, events, publications and more, or join the Healthy People Consortium and become an active supporter of Healthy People.

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This investment in the future of America’s health has revitalized the biomedical research community. Indeed, in June, the U.S. Department of Health and Human Services (HHS) announced that the Recovery Act drove a record number of NIH grant applications. The stimulus package provides available funds for two years, through September 2010.

This Thanksgiving, Research!America — the nation’s largest non-profit public education and advocacy alliance for discoveries in health — urges everyone to Thank President Obama for Reprioritizing Science and Health. Before year’s end, the President will decide what funding to recommend for NIH. Research!America provides a pre-formatted letter that thanks President Obama for his recommitment to science and urges him to continue making science and health a priority in 2011.

There has been a trend of flat or below-inflation funding for the NIH since 2003. Investment in biomedical research will lead to new medical breakthroughs and discoveries that will benefit everyone by helping to fight disease and improve the quality of life for everyone in America.

Please take a moment to email President Obama and urge him to continue prioritizing science and health in 2011.

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References

1. NIH’s Role in the American Recovery and Reinvestment Act (ARRA). National Institutes of Health. 2009 March 6.

To address the complaints, editors at some of the world’s leading medical journals have agreed to adopt a new standard conflict of interest disclosure form for researchers. The new rules, which were drafted by the International Committee of Medical Journal Editors (ICMJE), requires that authors disclose both financial and non-financial interests. Authors will now be asked to disclose four types of information [1]:

1. Associations with commercial entities that provided support for the work reported in the submitted manuscript.
2. Associations with commercial entities that could be seen as having an interest in the general area of the submitted manuscript.
3. Any similar financial associations involving their spouse or their children under 18 years of age.
4. Non-financial associations that may be relevant to the submitted manuscript.

At least a dozen publications have agreed to use the new disclosure form, including The Lancet, The Journal of the American Medical Association (JAMA), The New England Journal of Medicine (NEJM) and The British Medical Journal (BMJ). According to a story published online in the Wall Street Journal, the form will be phased in over the next several months [2].

An article in The Scientist, a magazine for life science professionals, pointed out that inclusion of peer reviewers would be useful for medical journal editors so that they can select reviewers that don’t have an interest in the research being evaluated [3]. However, the new disclosure guidelines set forth by the ICMJE only apply to authors.

Other issues with medical journals

Medical journals exert a great deal of influence over the health of millions of people everyday, affecting everything from how doctors treat patients to the actions taken by public health agencies. In 2007, Richard Smith, former editor of the British Medical Journal (BMJ) and chief executive of the BMJ Publishing Group, wrote a book titled The Trouble with Medical Journals. In the book, Smith addresses the failure of medical journals to effectively manage conflicts of interest. The new standard conflict of interest disclosure form described above should help journals do a better job at identifying commercial influence over published research. Smith goes on to discuss how money can taint objectivity in scientific publishing. Drawing from his own extensive experiences, he argues that medical journals have become “creatures of the drug industry”– fraudulent research and articles ghost written by pharmaceutical companies are widespread practices.

Many journals publish clinical trials funded by pharmaceutical companies. The results of these studies are rarely unfavorable to drug companies, not because the research is fraudulent, but in large part because of the types of questions asked by researchers (for more on this, see the video below). The larger problem is that medical journals often come to depend on income from the sale of article reprints to the very company which funded the trial. From the drug company’s perspective, a favorable clinical trial, advertising from worldwide distribution of the medical journal, and the media coverage of the study is worth the cost of thousands of article reprints. Indeed, since research quality has traditionally been measured by journal quality, physicians receiving the reprints typically equate the quality of the drug with the quality of the journal publishing the trial.

Smith also highlights the poor science that often appears in medical journals, with reports that rarely allow confident conclusions due to the lack of statistical power or controls. Many are Individual cases — anecdotal evidence at best — that cannot applied to the population.

Yet another issue with medical journals is the increasing exposure of research and contradictory findings in the mass media. Scientists and physicians typically wait for a series of studies to be done before evaluating the data; the way patients are treated doesn’t change on the basis of results from a single study. That’s how biomedical science works: knowledge accumulates and preponderance of data guides our understanding and conclusions. Nonetheless, medical journals are a combination of science and journalism, and frequently distribute press releases on new studies appearing in their pages.

Conflict of interest? Possibly, when the press release doesn’t properly frame the study results and implications. This is one of problems with “medical reporting by press release”.

You can read an edited introduction of the book published by the Journal of the Royal Society of Medicine [3].

In 2007, Peter Mansbridge, host of the Canadian CBC News program Mansbridge One on One, had a conversation with Richard Smith and discussed many of these issues [4]. The interview is presented below.

Conclusion

That concludes the eighth edition of MedLib’s Round. I hope the articles included in this edition provide useful strategies and resources for finding credible health information online.

The host of the next edition of MedLib’s Round will be Knowledge Beyond Words. Past and future hosts can be found on the MedLib’s Round blog carnival index page.

If you’d like to follow along with MedLib’s Round every month, subscription options are available: you can follow by email or RSS feed. An aggregated feed of credible, rotating health and medicine blog carnivals is also available. The Health and Medicine Blog Carnival Mashup can also be followed on Twitter @BioMedCarnivals and on FriendFeed (BioMedical Carnivals).

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References

1. Goldberg et al. Insta-Americans: The Empowered (and Imperiled) Health Care Consumer in the Age of Internet Medicine. The Center for Medicine in the Public Interest. 2008 Jan.

In this edition, moderator Lark McCarthy discusses the level of testing prior to the H1N1 influenza A vaccine distribution and the subsequent monitoring that’s planned during and after the phases of distribution with Dr. Bruce Gellin, Director of the National Vaccine Program Office (NVPO) within the HHS, Dr. Jesse Goodman, acting chief scientist with the U.S. Food and Drug Administration (FDA), Dr. Harvey Fineberg, President of the Institute of Medicine (IOM) and Dr. Anne Schuchat, Director of the Center for Immunization and Respiratory Diseases at the Centers for Disease Control and Prevention (CDC).

This video was recorded on October 14, 2009.

H1N1 vaccine distribution

An article published earlier this week in the Washington Post questioned the shortage of H1N1 flu vaccine. Out of 80-120 million doses promised for mid-October by pharmaceutical companies, only ~16.5 millions doses have been delivered thus far [1]. According to the story, government officials relayed information on vaccine availability to the public as soon as manufacturers provided estimates. However, company representatives have said that the government was informed about production challenges are are on track for vaccine delivery.

Those production challenges included a slow growing vaccine. Flu vaccines are currently grown in eggs, a process that normally takes six months [2]. To reduce the production time, several biotech companies are working to develop large-scale cell culture methods that could potentially grow vaccines in several weeks as opposed to the six months required for egg-based production [2].

Nevertheless, according to a post earlier this week on The Patient Report (via the AP), 22 million more doses of H1N1 influenza vaccine are now available and the shortage should ease over the coming weeks. Per our list of what you need to know about the H1N1 vaccine, check with your doctor, you children’s school and/or your local health department regarding a list of locations where the H1N1 vaccine will be offered.

While you’re waiting for the vaccine to become available, remember to take these preventative measures against the H1N1 influenza virus:

• Wash your hands often or use alcohol-based hand cleaner.
• Cover your nose and mouth with a tissue when you cough or sneeze! Dispose of promptly.
• Avoid touching your eyes, nose or mouth — these are areas where the virus can enter your body.
• Make sure you’re getting enough sleep.
• Eat well and drink plenty of fluids.
• Avoid sick people.

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References

1. Why such a shortage of swine flu vaccine? The Washington Post. 2009 Oct 27.
2. Gerdil C. The annual production cycle for influenza vaccine. Vaccine. 2003 May 1;21(16):1776-9.
   View abstract
3. Singer E. Pandemic fears hatch new methods in flu vaccine industry. Nat Med. 2005 Jan;11(1):4.
   View abstract

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Related articles

• Health 2.0 Highlights: June 6th, 2009
• Health 2.0 Highlights: February 9th, 2009
• Medicine 2.0 #27 – Communication is Key
• Digital Pathology and Visuvi Visual Search
• Consumer Hospital Comparison Website Now Includes Quality Data On Readmission Rates

The Highlight HEALTH Network promotes health literacy by presenting reliable, credible sources of health and medical information. As such, the theme for this month’s edition of MedLib’s Round is Finding credible health information online. As host, I invite you to send your submissions.

What is the MedLib’s Round Blog Carnival?

The MedLib’s Round Blog Carnival is a monthly blog carnival of the best articles in medical librarianship. The carnival is not restricted to librarians – anyone can submit as long as the post is relevant and of good quality. If you have an article on medical librarianship, PubMed, evidence-based medicine, information literacy or Web 2.0 tools, submit your article here or send it to me using the website contact form Priority will be given to those posts that focus on finding credible health information online.

Please submit your article no later than Wednesday, November 11th at 04:00:00 UTC (12:00pm CST).

Receive e-mail notification when MedLibs Round 1.8 is published.

An archive of all previous editions of MedLibs Round are listed at the MedLib’s Archive on Laika’s MedLibLog.

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Health Highlights is a biweekly summary of particularly interesting articles from credible sources of health and medical information that we follow & read. For a complete list of recommeded sources, see our links page.

• Journal of Participatory Medicine Launches at Connected Health | e-Patients.net

  A new academic journal is being launched this week. The Journal of Participatory Medicine will move the field from anecdote to science, with articles on principles, methods and evidence-based outcomes.

• Doctors have a duty to engage in social media | KevinMD.com

  This is how we fight health misinformation on the Web. Are you a physician, nurse or medical professional? It’s time to start using social media.

• What happens to neurology patients with symptoms “unexplained”? | BPS Research Digest

  What happens when neurology patients are told that their symptoms have no identifiable physical cause? Researchers followed patients for a year and a half to see if and how their diagnoses changed.

• Clean Those Surfaces! More Ways to Prevent Flu | Pulse + Signal

  No matter how many times you wash your hands, if your keyboard, desk or doorknob has flu germs on it, you have a problem.

• What the FDA sees that doctors and patients may never know | Schwitzer health news blog

  Gary Schwitzer notes a recent article in the New England Journal of Medicine that focused on how critical drug information from the FDA may fail to be included on the drug label or in relevant journal articles.

• New PubMed Video (U of Manitoba) | davidrothman.net

  The PubMed website has been redesigned. David Rothman posts a short video tutorial showing where you can find some useful tools in the new interface.

• In The U.S., Where You Live Determines The Healthcare That You Get | Healthcare Hacks

  The State Scorecard study shows that there are wide variations among states in the areas of access, quality, cost, equity and ability to live long and healthy lives.

• More About Patients and the Press | Doctor David’s Blog

  Participatory medicine is a model of medical care in which the active role of the patient is emphasized. Some patients not only take an active role, they push the boundaries of medicine and publish a case report describing their experience.

• Side-effects from placebos can be drug specific | Mind Hacks

  Have you ever wondered if patients given a placebo during a clinical trial experience side effects? It turns out they do. What’s more, a recent study examining the side effects reported by patients taking placebos in clinical trials to test migraine medications found that the placebo side effects are specific to the side effects that would be expected from the comparison drug.

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Two studies, which are available online as early release articles and will be published in the November edition of the Journal of the American Medical Association (JAMA), detail the characteristics, treatment and outcomes of critically ill patients with H1N1 in Mexico and Canada [1-2].

Although the death rate in each of the studies is quite different, it nonetheless is as high or higher than that of seasonal flu. Furthermore, although seasonal flu typically affects people of older age — the average annual rate of influenza-associated hospitalizations over the last 20 years for people age 65 and older is 70% [3] — these studies show that H1N1 is striking many who are much younger. In both studies, the majority of critically ill patients with influenza A H1N1 had rapidly progressive respiratory failure and required mechanical ventilation.

Critically ill patients with influenza A H1N1 in Mexico

The first observational study was of 58 critically ill patients with H1N1 at 6 hospitals in Mexico [2]. These patients accounted for 6.5% of 899 admitted to the hospital with confirmed, probable or suspected influenza A H1N1 between the months of March 24, 2009 and June 1, 2009. The patients had a median age of 44, just over half were female (53%) and 2 were healthcare workers. Two patients were children (10 and 14 years old). Only two patients had received a seasonal influenza vaccination in 2008 or 2009.

Patients developed symptoms a median of 6 days prior to hospitalization. Symptoms included fever, respiratory issues (cough, shortness of breath or wheezing), generalized weakness, muscle pain, headache and gastrointestinal symptoms of nausea, vomiting, or diarrhea. Additional disorders the patients presented with included obesity (36.2%), a past history of smoking (34.5%), hypertension (25.9%), diabetes type 1 or 2 (17.2%) and gastrointestinal disease (10.3%). The time from hospitalization to intensive care unit (ICU) admission was between 0 and 3 days. Almost all patients were treated with antibiotics; 78% received antiviral drugs (neuraminidase inhibitors); 69% received corticosteroids. Fifty-four of the 58 patients (93%), including one child, required mechanical ventilation during the course of hospitalization.

After 60 days from the onset of critical illness, 24 of the 58 (41%) had died. Most died within the first 2 weeks. The median age of patients who died was 39. All deaths within 28 days were primarily related to respiratory failure, with only one late death primarily related to multisystem organ dysfunction. Both children survived.

Critically ill patients with influenza A H1N1 in Canada

The second observational study was of 215 critically ill patients with confirmed, probable or suspected influenza A H1N1 at 38 study intensive care units in Canada [3]. Since patients that had confirmed or probable H1N1 infection were significantly younger, had a longer duration of mechanical ventilation and ICU stay, and higher mortality than those with suspected disease, the analysis was restricted to the 168 patients that had confirmed or probable influenza A H1N1 infection. The patients had an average age of 32.3, 67.3% were female, and 30% were children. Only 10 of the 168 patients (6%) had received a seasonal influenza vaccination in the past two years.

Patients developed symptoms a median of 4 days prior to hospitalization. The most common symptoms included fever, respiratory issues, weakness and muscle pain. Possible bacterial pneumonia was present in just over 54 patients (30%). Additional disorders the patients presented with included chronic lung disease (including asthma, COPD and bronchopulmonary dysplasia; 41.1%), obesity (33.3%), hypertension (24.4%), a past history of smoking (22.6%) and diabetes type 1 or 2 (20.8%). The time from hospitalization to intensive care unit administration was between 0 and 2 days.

Almost all patients were treated with antibiotics; 90.5% received antiviral drugs (neuraminidase inhibitors); 50.6% received corticosteroids. Mechanical ventilation was used in 81% of patients on the first day of ICU admission. Clinical evidence for bacterial pneumonia following ICU admission was found in almost one-quarter of patients (41 of 168).

After 90 days from the onset of critical illness, 29 of the 168 (17.3%) had died. Eighteen patients died within the first 2 weeks and 24 died within 28 days from the onset of critical illness. The median age of patients who died was 42. The primary reported causes of death included severe respiratory failure, secondary infection and sepsis (generalized invasion of the body by pathogenic microorganisms or their toxins), and multiorgan dysfunction.

What to expect

An accompanying editorial in the JAMA issue said that although both studies have substantial epidemiological limitations, they nonetheless [4]:

… provide important signals about what clinicians and hospitals may confront in the coming months. H1N1 can produce a rapidly progressive respiratory failure that is refractory to conventional mechanical ventilation, often in young, healthy patients — a group who are not currently a priority group for H1N1 vaccination.

You can protect yourself from the H1N1 virus as well as the seasonal flu:

• Get the H1N1 vaccine and the seasonal flu vaccine.
• Wash your hands often or use alcohol-based hand cleaner.
• Don’t cover your nose and mouth with you hand when you cough or sneeze! Use a tissue instead and throw it in the trash after use.
• Avoid touching your eyes, nose or mouth — these are areas where the virus can enter your body.
• Avoid sick people.
• Get lost of rest, eat well and drink plenty of fluids.
• If you do get sick, stay home.

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References

1. Dominguez-Cherit et al. Critically Ill Patients With 2009 Influenza A(H1N1) in Mexico. JAMA. 2009 Oct 12. [Epub ahead of print]
   View abstract
2. Kumar et al. Critically Ill Patients With 2009 Influenza A(H1N1) Infection in Canada. JAMA. 2009 Oct 12. [Epub ahead of print]
   View abstract
3. Thompson et al. Influenza-associated hospitalizations in the United States. JAMA. 2004 Sep 15;292(11):1333-40.
   View abstract
4. White and Angus. Preparing for the Sickest Patients With 2009 Influenza A(H1N1). JAMA. 2009 Oct 12. [Epub ahead of print]
   View abstract

Scientific research in the late 1990s was finding that the adult brain had a much greater capacity for neuroplasticity — the ability to change structure and function in response to thought, learning and experience — than was previously believed [2-3]. Neuroscientists found that the adult brain was capable of growing new dendrites, branched projections from a neuron or nerve cell that conduct electrochemical stimulation received from other neural cells toward the cell body of the neuron, which are often damaged as a result of traumatic head injury or stroke. In adult macaques, researchers found that new neurons were produced in brain regions important for congitive function [4]. The view that aging was equivalent to ubiquitous and rapid cognitive decline thus gave way to a recognition that, for some people, mental acuity continues well into old age. Today, it’s common to hear about “brain fitness” and/or “brain training” products that can help to maintain and/or rebuild cognitive performance. However, in this rapidly evolving field, it’s difficult to discern fact from fiction.

The Sharp Brains Guide to Brain Fitness: 18 Interviews with Scientists, Practical Advice, and Product Reviews, to Keep Your Brain Sharp is written for both lifelong learners, caregivers and professionals in fields such as healthcare, education or psychology. The goal of the guide is to help people make informed decisions about brain health and cognitive fitness, based on the latest scientific research, and to help navigate new products and confusing myths and claims that are part of the emerging brain fitness market.

The guide is co-authored by Alvaro Fernandez and Dr. Elkhonon Goldberg, co-founders of SharpBrains, a leading market research and advisory services firm covering the growing number of education and healthcare applications of cognitive science and neuroscience. Alvaro Fernandez sent Highlight HEALTH a copy of the guide for review and, to get right to the point, I found it to be an excellent read on the field of brain fitness and results of research into neuroplasticity. At a succinct 150 pages, The SharpBrains Guide to Brain Fitness provides a complete yet easy-to-read overview of the science, products and trends in the brain fitness market.

The SharpBrains Guide to Brain Fitness is organized into seven chapters:

• The Brain and Brain Fitness 101
• The 4 Pillars of Brain Maintenance
• Mental Exercise vs. Mental Activity
• Brain Training Software: Profiles, Evaluation Criteria and 21 Quick Picks
• A Growing Range of Applications
• Ready for the Future?
• Opening the Debate

The first four chapters open with bulleted list of take-home points. Each chapter is logically organized with numbered subsections. The SharpBrains Guide to Brain Fitness has a concise table of contents as well as a glossary, index and list of references for each chapter. At the end of chapters 1–3 and 5 are transcripts of interviews conducted by Alvaro Fernandez over the last two years (September 2006 — November 2008) with 18 prominent scientists in the field that provide in-depth reviews of the scientific topics covered. I found the informal interview format an excellent way to explain the evidence-based research. It was also enlightening to read each scientist’s views on their findings and the implications for brain health.

The book also contains practical tips on how to improve learning abilities, nutritional recommendations for brain health and how to manage stress. The authors frequently repeat information — which I found to be particularly helpful at driving home important concepts — from the bulleted list of take-home points at the beginning of chapters, to the brief mention of topics early in each chapter that are then discussed in more detail in the end-of-chapter interviews, to important “take away” paragraphs.

Chapter 4 focuses on brain training software and details a checklist for evaluating computer-based programs. The top products are organized into three categories based on purpose and include information on the product type and target age, targeted brain function, level of clinical validation and price point:

• Top 8 overall brain maintenance products
• Top 8 targeted brain workout products
• Top 5 stress management products

Since I have a young daughter, I specifically focused on software targeted for children. I was disappointed to find that there are few products currently available for children that have a medium to high level of clinical validation and are priced under $100. Nevertheless, thanks to the guide, I was able to review a number of online resources that are quite affordable (albeit with very limited or low clinical validation). As the field continues to grow and more research is done, I’m sure there will be additional products to choose from and SharpBrains will be there to break it all down for us.

Chapter 6 describes trends the authors believe to be important for brain health and provides ideas on how to introduce brain fitness into your personal life and/or workplace. The chapter also details ongoing studies and upcoming initiatives focused on brain fitness and neuroplasticity.

In summary, the SharpBrains Guide to Brain Fitness is an essential reference on the field of brain fitness, neuroplasticity and cognitive health. The guide aims to educate readers about brain health and cognitive fitness, and to categorize and describe top products in the emerging brain fitness market. It does this brilliantly, including the latest findings from evidence-based research in an easy-to-read manner. If you’re interested in brain fitness and cognitive health, your first step should be to read The Sharp Brains Guide to Brain Fitness.

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References

1. Sara Mead. Million Dollar Babies: Why Infants Can’t be Hardwired for Success. Education Sector. 2007 Apr 3.
2. Kolb and Whishaw. Brain plasticity and behavior. Annu Rev Psychol. 1998;49:43-64.
   View abstract
3. Buonomano and Merzenich. Cortical plasticity: from synapses to maps. Annu Rev Neurosci. 1998;21:149-86.
   View abstract
4. Gould et al. Neurogenesis in the neocortex of adult primates. Science. 1999 Oct 15;286(5439):548-52.
   View abstract

Two women, Elizabeth H. Blackburn, age 61, at the University of California in San Francisco, and Carol W. Greider, age 48, at Johns Hopkins University School of Medicine in Baltimore along with one man, Jack W. Szostak, age 57, at Harvard Medical School, will share the $1.4 million prize.

Telomeres are regions of repeating DNA sequence at the ends of chromosomes (picture the aglets, or plastic sleeves, at the ends of a shoelace). These unique sequences serve to protect the chromosomes from being degraded as cells divide. The enzyme that forms telomeres is called telomerase. If the telomeres are shortened, cells age. In contrast, if telomerase activity is high, telomere length is maintained and cellular senescence (meaning the processes of deterioration) is delayed.

Increased telomerase activity is observed in cancer cells. Modestly reduced telomerase activity is implicated in bone marrow failure and pulmonary fibrosis [1]. Accelerated shortening of telomeres in peripheral blood lymphocytes, including T cells, has been observed in a number of diseases, including Down syndrome, rheumatoid arthritis and cardiovascular disease [2-4]. Research also suggests that telomere shortening occurs in mood disorders [5].

A brief history of telomere and telomerase research

Elizabeth Blackburn was studying a unicellular organism called Tetrahymena in the early 1980s and observed that a DNA sequence was repeated several times at the ends of chromosomes. At the same time, Jack Szostak had observed that a linear DNA molecule, a type of minichromosome, was rapidly degraded when introduced in yeast cells. Blackburn and Szostak collaborated to couple the repeated Tetrahymena DNA sequence to the minichromosome. Surprisingly, the repeated DNA sequence — now recognized as a telomere — protected the minichromosome from degradation [6]. Szostak went on to identify mutations in yeast that led to a progressive decrease in telomere length and increased frequency of chromosome loss [7]. In subsequent years with further research, it became clear that telomeres, with its characteristic repeated DNA sequence, is present in most plants and animals.

Carol Greider was a graduate student of Blackburn, who in 1984 provided evidence for an enzyme that could form telomere DNA. Greider and Blackburn purified the enzyme and called it telomerase. They showed that telomerase extends telomere DNA necessary for the replication of chromosome ends [8-9].

NIH Director Francis S. Collins, M.D., Ph.D., said [10]:

The question of how cellular aging relates to abnormal cell division, such as cancer, and the aging of organisms continues to be the focus of rigorous study, thanks to the insights of Drs. Greider, Blackburn and Szostak. These NIH grantees’ discoveries offer a classic example of how basic science research driven by investigators’ curiosity can illuminate our understanding of health and disease.

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References

1. Lansdorp PM. Telomeres and disease. EMBO J. 2009 Sep 2;28(17):2532-40. Epub 2009 Jul 23.
   View abstract
2. Vaziri et al. Loss of telomeric DNA during aging of normal and trisomy 21 human lymphocytes. Am J Hum Genet. 1993 Apr;52(4):661-7.
   View abstract
3. Koetz et al. T cell homeostasis in patients with rheumatoid arthritis. Proc Natl Acad Sci U S A. 2000 Aug 1;97(16):9203-8.
   View abstract
4. Fuster and Andres. Telomere biology and cardiovascular disease. Circ Res. 2006 Nov 24;99(11):1167-80.
   View abstract
5. Simon et al. Telomere shortening and mood disorders: preliminary support for a chronic stress model of accelerated aging. Biol Psychiatry. 2006 Sep 1;60(5):432-5. Epub 2006 Apr 11.
   View abstract
6. Szostak and Blackburn. Cloning yeast telomeres on linear plasmid vectors. Cell. 1982 May;29(1):245-55.
   View abstract
7. Lundblad and Szostak. A mutant with a defect in telomere elongation leads to senescence in yeast. Cell. 1989 May 19;57(4):633-43.
   View abstract
8. Greider and Blackburn. Identification of a specific telomere terminal transferase activity in Tetrahymena extracts. Cell. 1985 Dec;43(2 Pt 1):405-13.
   View abstract
9. Greider and Blackburn. The telomere terminal transferase of Tetrahymena is a ribonucleoprotein enzyme with two kinds of primer specificity. Cell. 1987 Dec 24;51(6):887-98.
   View abstract
10. NIH Grantees Win 2009 Nobel Prize in Physiology or Medicine for Telomere Research. NIH News. 2009 Oct 6.

The power of this technology is that the medical images in the databases have corresponding case information. Thus, images that are found to be similar also provide information on patient diagnosis, treatments, outcomes, etc. This is particulary useful in oncology since, in more cases than you’d expect, pathologists disagree on whether a particular image shows cancer or not [1-3]. By comparing pathology images, the technology greatly accelerates the review process and allows a diagnosis to be more objective than what is currently done.

Check out their demo at the conference in the video below. James Gosling (the inventor of Java) was clearly impressed with the significance of the technology. Chris Boone, CEO and president of Visuvi, and Florian Brody, VP Marketing, highlighted and captured a section of an actual prostate cancer biopsy image and searched 90,000 images in 0.3 seconds to find related patient cases.

PathXchange is a not-for-profit professional networking portal for the global pathology community. PathXchange brings the field of pathology into the digital age with Web 2.0 features designed to promote exchange of pathological cases, knowledge and information, combining the elements of a case gallery, community content contribution and professional networking.

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References

1. Farmer et al. Discordance in the histopathologic diagnosis of melanoma and melanocytic nevi between expert pathologists. Hum Pathol. 1996 Jun;27(6):528-31.
   View abstract
2. Lettieri et al. Discordance between general and pulmonary pathologists in the diagnosis of interstitial lung disease. Respir Med. 2005 Nov;99(11):1425-30. Epub 2005 Apr 21.
   View abstract
3. Lodha et al. Discordance in the histopathologic diagnosis of difficult melanocytic neoplasms in the clinical setting. J Cutan Pathol. 2008 Apr;35(4):349-52.
   View abstract

Related articles

• Health 2.0 Highlights: November 1st, 2009
• Survival Rate Influences the Type of Web Communities Used by Cancer Patients

Last year, members of the HQA together with the Centers for Medicare & Medicaid Services and the Department of Health and Human Services created a consumer-oriented hospital comparison website called Hospital Compare. Hospital Compare provides information on how well hospitals care for patients with specific medical conditions or surgical procedures, as well as results from a survey of patients about the quality of care they received during a recent hospital stay.

Yesterday, new quality data on hospital readmission rates was made available on the Hospital Compare website. The data includes hospital readmission rates for Medicare patients with heart attack, heart failure and pneumonia. This is especially relevant in today’s healthcare reform environment because the issue of hospital readmissions has been cited by policy makers and the Obama administration as a potential opportunity for improving healthcare quality and reducing unnecessary healthcare spending [2]. Indeed, a recent New England Journal of Medicine study found that almost one-fifth of Medicare beneficiaries discharged from the hospital were readmitted within 30 days; one-third were rehospitalized within 90 days [3].

Until now, hospitals have had only information on those patients who return to their own hospital, but not about patients who were readmitted to a different hospital. Using Medicare billing records from July 2005 to June 2008, the information on Hospital Compare shows how often a Medicare patient with one of these conditions returns to the same hospital or a different hospital within 30 days following their initial stay. Hospitals are placed in one of three categories based on their readmission rate in relation to a national readmission rate – “no different than the U.S. national rate”, “better than the U.S. national rate” or “worse than the U.S. national rate”. Each hospital’s readmission rate for the specific condition also can be compared to its state’s average. Additionally, each rate is shown as a single number, along with a confidence interval that indicates the range of certainty in which the hospital’s true performance falls.

The new quality data on hospital readmission rates is being added to existing information on how often hospitals take the right steps to provide care for their patients, as well as updated information on mortality rates. Available information includes statistics on a variety of quality measures such as:

• Percent of surgery patients who were given an antibiotic at the right time (within one hour before surgery) to help prevent infection
• Percent of surgery patients whose doctors ordered treatments to prevent blood clots after certain types of surgeries
• Percent of heart attack patients given aspirin at arrival
• Percent of pneumonia patients given the most appropriate initial antibiotic(s)
• Percent of heart failure patients given discharge instructions
• Percent of children who received reliever medication while hospitalized for asthma

In addition, Hospital Compare includes statistics on answers to a survey of patients’ hospital experiences, such as:

• Percent of patients who reported that their doctors “Always” communicated well
• Percent of patients who reported that staff “Always” explained about medicines before giving it to them.
• Percent of patients at each hospital who reported that YES, they were given information about what to do during their recovery at home.

You can search for hospital information in your area using either a general search or a specific medical condition or surgical procedure search. The general search provides information on Hospital Process of Care Measures, Hospital Outcome of Care Measures, and Survey of Patients’ Hospital Experiences. The specific medical condition or surgical procedure search provides information on Hospital Process of Care Measures and Hospital Outcome of Care Measures (where applicable), Survey of Patients’ Hospital Experiences, and Medicare Payment and Volume. The Hospital Compare database is updated on a quarterly basis.

Interested in how your hospital stacks up to others in the area? Find and Compare Hospitals

Are you a Twitter user? Tweet this!

References

1. Vital New Quality Data on Hospital Readmission Rates Available on Hospital Compare Website. Hospital Quality Alliance press release. 2009 July 9.
2. Health Reform’s Benefits for Middle Class Under Scrutiny. Kaiser Health News. 2009 Jun 25.
3. Jencks et al. Rehospitalizations among patients in the Medicare fee-for-service program. N Engl J Med. 2009 Apr 2;360(14):1418-28.
   View abstract

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This is the kind of story that gets me out of bed before I go to work in a few hours at our small medical library and to try to get the news out of what should be a fascinating development in search, Health 2.0, Science 2.0 and public discussion of patient empowerment and in neurologic science generally. I have been sent through my connections at AltSearchEngines and Next Generation Science a link to the Marketwire press release “PatientsLikeMe Launches Genetics Search Engine for ALS Patients“.

I spent many hours in the amyotrophic lateral sclerosis community of Patients Like Me in 2007 — 2008 and still visit it occasionally. It is a remarkable instance of a close-knit group of people united by the personal tragedy of either having Lou Gehrig’s Disease (ALS) or caring for and/or about someone with it. The founders of Patients Like Me (PLM), Jamie and Ben Heywood, have since created similar online patient communities for Parkinson’s Disease, Multiple Sclerosis and so on.

I briefly met Ben Heywood at a recent Health 2.0 conference. Both he and Jamie are frequent speakers at Health 2.0 and Web 2.0-related gatherings and have been the subject of books and documentaries. The documentary So Much So Fast shows the courageous struggle their brother Stephen made against the ravages of ALS. The solidarity and love his family showed in that struggle is one of the most moving films ever made and should be viewed by literally anyone in the health sciences, encompassing as it does the minutiae of confronting ever growing disability and the quest to obtain accurate medical information in the Internet Age. The Heywood brothers have accomplished remarkable things across a variety of fields, notably in prodding the research establish to fast track research in ALS and to engage in far more transparent practices. They and men like Augie Nieto are the kind of people that leave one feeling that individuals can make a difference even in the face of such frightening specters as a diagnosis of ALS.

But I do have my qualms and concerns about some of the PLM initiatives. Even when papers about it appear in the standard medical literature in PubMed, the authors of the papers are usually affiliated in some way with PLM. It would be nice if there were at least a few by neurologists who have no relationship at all to PLM that reported on advances made as a result of the data acquired from the self-reports that PLM members upload to PLM databases.

The search engine is simply called the Genetics Search Engine, although it covers only ALS and thus is likely to create some branding confusion.

The PLM blog post announcing the launch of the new search engine states: “Today, we’re announcing the launch of our Genetics Search Engine for people with ALS. Imagine finding other patients just like you, down to the genetic level. Patients in our ALS community can now do that. (For patients who don’t see their genetic mutation right now, that’s alright. They can be the first with that genetic mutation to join our community and share information about the disease.) What does sharing genetics mean for research? By capturing data on familial ALS patients’ known genetics, such as the A4V or D90A mutations in superoxide dismutase 1 (SOD1) and the P56S mutation in vesicle-associated membrane protein-associated protein B (VAPB), we can learn more about the cause and effects of every kind of ALS and better our chances of advancing research and finding new treatments. Our goal in launching the Genetics Search Engine (and other upgrades like it) is to help patients find others just like them and enhance our understanding of the phenotype of each genetic mutation (i.e., different causes of ALS have faster or slower disease progression).”

This brings up some interesting issues:

• As noted, there is the matter of branding. The wording “… other upgrades like it” suggests that this is the first of what may become a series of search engines for genetic mutations. That is an intriguing development and illustrates the genuine knack for marketing and technological innovation that has always made PLM a leader in the patient social networking space even as other such communities (such as Trusera) with much less drive to actually contribute to the medical science related to the travails of members have struggled to attract and retain users.

• The Genetics Search Engine does not appear particularly innovative or interesting vis-a-vis search technology. It seems, indeed, to be fairly unspectacular and rudimentary in that respect. But it is certainly more handsome and engaging than ALSOD: the Amyotrophic Lateral Sclerosis Online Database, which covers only SOD1 mutations and is designed for medical professionals, not patients and the general public.

• The wording “Imagine finding other patients just like you, down to the genetic level” is quite fascinating. ALS is a rare disorder and now patients can find in that small group an even smaller group and, now, so can researchers. This has all kinds of implications for organizing patients into lobbying groups for research into that particular mutation. That might actually advance research, given that the intense study of one gene or one mutation could benefit the entire ALS population. Alternatively, it could hinder advancement if a vocal group successfully wins earmarks for what turn out to be blind alleys. In any case, it is a brave new world in which people can form political, emotional and social bonds on the basis of genetic mutations. This is a good thing for public education in medical matters and public discussion of important scientific and bioethical matters.

• The development of the search engine and what becomes of the data is something that all those intrigued by the era of personalized medicine will watch with intense interest. Some argue that such data will prove of limited utility for decades and that it is cruel and deceptive to suggest to patients that hours spent mastering the arcana of genetics will improve their short-term prospects and day-to-day quality of life. Indeed, part of the marketing muddle is that the press release does not make the distinction clear between familial ALS and the sporadic type, the former being much rarer. Jamie Heywood is quoted as saying:

  Beyond the research implications of what this means today, if you’re a patient with familial ALS, you can now use this information to make better decisions about your healthcare and learn from the experiences of others like you.

  But that group is a small subset of the greater ALS patient population as a whole and the press release makes it sound like the Genetics Search Engine is a potential boon for all ALS patients. It could be, but that isn’t made clear.

But one should not complain too much given the obvious solace and genuine enjoyment members find in PLM and the impressive amount of useful information exchanged there on matters of nutrition, respiratory care, assistive technology and such, necessary in the care of patients with this illness. The fact that PLM has 3,400 members worldwide alone is impressive given that there only an estimated 30,000 people with the disease in the U.S. in any given year.

It will be interesting to see what public comment discussion is engendered by this development vis-a-vis patient education and genomics, and the ethical and health information management issues raised by patients taking an ever more intense interest in the building blocks of their very beings and expecting frontline clinicians to treat them by utilizing such data.

This not just an ALS story. This is a new era in medicine.

About the author: Hope Leman writes about Health 2.0 and the e-patient movement at Significant Science. She is also a writer for AltSearchEngines, which covers hundreds of alternative / niche search engines. Hope is a research information technologist for a health network in Oregon and is also Web administrator of the grants and scholarship listing service ScanGrants.

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Consumer health sites are all over the Web and more and more of the content they are producing is working its way into search engine results on health-related topics. Some of this material is solid enough, but much is simply banter or commiseration of one heathcare consumer to another. Knowing ahead of time about these sites can save power searchers in health matters time and prevent ill-considered clicking on what is almost certainly likely to be fluff or outright rubbish.

OrganizedWisdom is one such consumer health site and indeed if you go by its notable presence at conferences such as Health 2.0, it is a market leader in this space. It certainly excels at parlaying a bargain basement marketing gimmick, its WisdomCards, into a reputation for business savvy.

On its home page, the peel away top right corner reveals that WisdomCards are “Your guide to the best health resources” and touts “We do the Searching for you!”

Now, I don’t really get the appeal of the whole WisdomCard thing. Basically, each WisdomCard is simply a page of results organized in much the same way as you might find on MedlinePlus, say, or RightHealth.

Moreover, the “hand-crafted by experts” part doesn’t really inspire confidence. Take the WisdomCard for ALS, for instance. Clicking on “About this WisdomCard” reveals that the card was contributed by Tonya J. and reviewed by Pat. However, there is no information about who Tonya J. or Pat are. I was able to find information about the composition of the OrganizedWisdom Physician Review Team. Consisting of four medical doctors, OrganizedWisdom’s Physician Review Board is “responsible for training, educating and guiding all our Guides. In addition, we take great care in hiring people who have extensive health backgrounds, personal experience with health issues, or who may have served as caregivers, health advocates or health professionals.”

Nevertheless, given that credibility is a fairly basic component of consumer health searching on the Web, it is fairly amazing that OrganizedWisdom has received such positive coverage in the business press (the rah-rah, go team buzz it generates in such venues as the Health 2.0 conference is less surprising).

For instance, on the basics of cross-referencing OrganizedWisdom falls flat. Case in point: You can call up a WisdomCard on ALS provided that you call it ALS and not Amyotrophic Lateral Sclerosis and we are told once at the ALS WisdomCard to, “Try also: Muscular Dystrophy; Myasthenia Gravis; and …” (trails off there) but not Lou Gehrig’s Disease, which does not have a WisdomCard of its own, and not Motor Neuron Diseases, which is a topic allocated to a WisdomCard. And on that card you do at least get the last names of the contributor and the reviewer. The Motor Neuron Disease WisdomCard was contributed by Elisa Carter. According to her (self-listed?) health experience, she has spent 15 years working in the medical field as a Supervisor in a Hospital Admissions Department and has managed administrative staff for a large multi-physician office that included pediatricians, a cardiologist and an internist. The Motor Neuron Disease WisdomCard was approved by TaraS. According to her (self-listed?) health experience, “Her medical knowledge comes from years as a medical secretary and in administration for physicians’ offices specializing in internal/pulmonary medicine, orthodontics and pediatrics. She has also served as a health advocate and caregiver for people with disabilities, a role that brought her to a nuanced understanding of Web health search and online research.”

I am not against consumer health sites. Indeed, I get rather impatient with the persnickety attitude some in the medical library community take towards them. But it is unnerving to think that the “serial entrepreneurs” (as founders Steven Krein and Unity Stoakes style themselves) can generate such hype on the basis of some quite sloppy, not ready for prime time stuff as is on OrganizedWisdom. Call in a librarian, guys, to inject some order into the currently messy state of affairs in your WisdomCard world.

I decided to try to determine what qualifications guides (the term appears to cover both contributors and reviewers) must meet. The page Become a Guide outlines a three-step process to apply to become an OrganizedWisdom Guide. First you register with the site, then you fill out a Guide Application, providing as much information as possible about “any related experience, whether in paid or volunteer work, that will contribute to your success. OrganizedWisdom Guides need to be self-motivated, well organized, able to discriminate between good and bad information, and able to check their own work. And yes, spelling and attention to detail counts.” Applicants then take an open book test. At the bottom of the page is a list of reasons OrganizedWisdom rejects Guide applications:

• No relevant experience.
• Misspellings or poor grammar on application.
• Incorrect answers on Open Book Test.
• Applicant did not check “I am over 13 years old.”
• Applicant did not check “I agree to the Guide Terms of Service.”
• Applicant did not provide full name, address and telephone information which we need for payment verification.
• Applicant does not live in the United States (sorry, we can only accept U.S. applicants).

Although the results on the WisdomCards are acceptable, they are not noticeably better in terms of links or richness of multimedia content than you would find on RightHealth and certainly lack the authoritativeness of MedlinePlus. Additionally, the web site has has navigation problems. For instance, it not always clear when you are in a WisdomCard nor how to get to one, except by browsing through an alphabetical list, and even that is not reliable as there seemed to be a WisdomCard for the man Lou Gehrig but not for the disease named after him, but the biographical entry does not appear to be in the alphabetical list and so on.

All in all, much ado about very little in the case of OrganizedWisdom.

Additional health search resources are listed in the Highlight HEALTH Web Directory.

About the author: Hope Leman writes about Health 2.0 and the e-patient movement at Significant Science. She is also a writer for AltSearchEngines, which covers hundreds of alternative / niche search engines. Hope is a research information technologist for a health network in Oregon and is also Web administrator of the grants and scholarship listing service ScanGrants.

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Just try keeping track of the plethora of players in the online patient community / health-focused social network scene. Many patient communities have been started (e.g. MDJunction) by entrepreneurs who were spurred to create their sites by the difficulties friends or relatives had in obtaining emotional and social support during prolonged battles with illness.

HopeCube is one such site. HopeCube, like its rivals Trusera and MDJunction, has virtually no presence of medical professionals (unlike the heavy presence of such at sites such as MedHelp). At HopeCube, there are a mere six MDs listed under the category “Health Professionals” and the others on that page were providers of the New Age variety (e.g. relationship counselors — misspelled on the site as “counseler” — and fitness trainers). The details on this limited number were sketchy and many of the links on the page were dead. One of the doctors listed is Dr. David Kim of Beverly Hills Plastic Surgery, which gives you an inkling of HopeCube’s target audience.

Rather interestingly, unlike the blog of Patients Like Me and that of OrganizedWisdom, which are slick marketing tools, HopeCube’s blog is a forum for HopeCube members who, incidentally, don’t seem to be into tagging their entries given that the vast majority of them fall under the unhelpful rubric “Uncategorized.” HopeCube’s blog appears to be the main method of participation for many of the members. But the participation is asymmetric in that the vast majority of entries have not elicited any comments.

HopeCube may not have the lineup of medical heavyweights that is a notable feature of MedHelp, but it does provide helpful links to authoritative sources. For instance, on the amyotrophic lateral sclerosis page the related links were to the Mayo Clinic, MedlinePlus and the ALS Association — all solid, reputable sources. There was also a handy pathway to recent stores on Neurology / Neuroscience News in the online news service, Medical News Today which is a very useful resource in and of itself and one which I have not seen on other consumer health sites or at rival online patient communities in particular.

But much of the rest of the site seems mundanely pre-Web 2.0 in many respects. Rather blah interface and much of the site is old-line discussion board question and answer stuff at the member to member level — a far cry from the medical authority-laden dialogues of MedHelp or of the longstanding easy camaraderie among the members of Patient Like Me. You just have to wonder when health consumers will say, “Enough already with one paragraph answers by Joe Average — I will just call my local public library or visit MedlinePlus.” I thought that maybe I was just not seeing a richer interactive experience because I had not registered, so I finally reluctantly did (which, admittedly, went smoothly enough). But I still didn’t see much that wowed me — the interactivity level of HopeCube is circa 2001.

I don’t think HopeCube has too bright a future and is pretty pedestrian on the whole. Those who want to get health information from other health consumers would be better off visiting the far livelier, content-rich Omgili Health.

Additional patient social networks are listed in the Highlight HEALTH Web Directory.

About the author: Hope Leman writes about Health 2.0 and the e-patient movement at Significant Science. She is also a writer for AltSearchEngines, which covers hundreds of alternative / niche search engines. Hope is a research information technologist for a health network in Oregon and is also Web administrator of the grants and scholarship listing service ScanGrants.

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• Diabetes 2.0

All of the Highlight HEALTH Network websites are now HONcode accredited:

• Highlight HEALTH
• The Highlight HEALTH Web Directory
• Highlight HEALTH 2.0

The Health On the Net (HON) Foundation is a non-profit international organization promoting and guiding the growing community of healthcare providers and consumers on the World Wide Web to sound, reliable health information and expertise through quality assessment and systematic and stringent peer review.

There are 8 principles of the HON Code of Conduct (HONcode):

1. Authority – Indicate the qualifications of the author(s).
2. Complementarity – Information should support, not replace, the doctor-patient relationship, which is the desired means of contact.
3. Privacy – Respect the privacy and confidentiality of personal data submitted to the site by the visitor.
4. Attribution – Cite the source(s) of published information, date and medical and health pages.
5. Justifiability – The website must back up claims relating to benefits and performance.
6. Transparency – Accessible presentation, accurate email contact of authors.
7. Financial disclosure – Sponsorship should be transparent and funding sources identified.
8. Advertising policy – Clearly distinguish advertising from editorial content.

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• No Related Post

Three websites make up the Highlight HEALTH Network:

• Highlight HEALTH 2.0
• Highlight HEALTH
• The Highlight HEALTH Web Directory

Each of these sites has a different purpose. Highlight HEALTH 2.0 is a group effort to follow the use of Web 2.0 in health and medicine (if you’re interested in writing a review about a social health network or co-blogging about the integration of Web 2.0 technologies into health and medicine, please let us know). Highlight HEALTH promotes advances in biomedical research to encourage health literacy. Lastly, the Highlight HEALTH Web Directory is an online reference guide for reliable health and medical information.

There are more ways than ever to connect with the Highlight HEALTH Network, including email/RSS, Twitter and Facebook. If you have an internet-enabled cell phone, Highlight HEALTH 2.0 can be accessed via the mobile web.

Top 5 most popular articles

Here are the most popular articles for 2008 (top 5 based on the number of page views/number of days posted):

1. Online Patient Community Battle for Survival: MDJunction
2. iMedix: Reliable Health Search and Patient-to-patient Social Network
3. Mednar Search … and Hope said, “It is good.”
4. Following the Tweets of Health
5. Core Biomedical Research Software and Web 2.0 Tools

Thank you and Best of Health in the coming year!

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